10 February 2017
Our Impact - Kawasaki Disease Awareness Day!
Oh wow..... We've been just delighted with the level of support we've had from you all and our partners in 2017 so far. Mobilising quickly to capitalise on Awareness Day, we worked together with the World Heart Federation, British Heart Foundation, Kawasaki Disease Canada and the RCPCH - to name a few partners - to lead the UK 'leg' of this important event, focusing on Kawasaki Disease. The UK has never really taken part in an organised way before so we were keen to do this well on behalf of our UK Kawasaki Disease community. The results have been remarkable!
By working in partnership, our social media campaign reached tens of thousands of people - we reached over 50,000 people with our own tweets and benefited hugely when amazing partners like Virgin Trains and EE retweeted our messages. We have been just staggered by the scale of community we have been able to reach and connect with. Ailsa, our Glasgow 'poster girl' engaged us with Jive Glasgow and the Scottish student community - THANK YOU!
Retweeted by big players like Jive Bristol, our 'Our man in Bristol' tweet of the fabulous Prof Rob Tulloh was the most re-tweeted tweet of our campaign - we were not surprised! BHF and WHF re-tweets scaled up our impact throughout the day. One single #ShowUsYourHeart tweet - John, Chef on Virgin Trains, when retweeted by Virgin Trains, reached over 10,000 people (as well as going to the accounts of 220k Twitter users!) British Transport Police were AMAZING too in their support for us, being our 'poster boys' for the London press release pic as well as re-tweeting our Kawasaki Disease message. THANK YOU!
Colleagues in Kawasaki Disease Canada played a critical role - as co-authors of our joint press release and as Twitter 'companians' throughout 26 January. We passed the 'baton' to them at 6pm for more great work to be done. And last but not least.....our amazing individual Twitter followers, including KSSG and so many dedicated people who were alongside us all day, retweeting and raising awareness through their own messages - through Facebook, LinkedIn and much more.
WOW!!!! What an amazing start to 2017. Now on to do more.... Join us! There's so much to be done! Want to fundraise or donate to make a difference today? Please - get in touch! Kawasaki Disease is the leading cause of acquired heart disease in children in the UK.... it's time we changed that -- TOGETHER we will!
Rachael, for Societi
Sue, Claire and I worked hard throughout the three days of the event – and both Claire and I worked solidly for a couple of weeks beforehand to make sure we had clear strong facts and figures, as well as plenty of information to give away - to tell our audience all about Kawasaki Disease! The impact statement has been on our website for a while – we worked quickly to get that out as we wanted to share with you just how beneficial our partnership had, once again, been. Together we can achieve so much!
Tomorrow is another massive milestone! We’ll be with Neeta (KSSG member) at her business offices in London supporting her as she runs a Kawasaki Disease awareness event. We’ve created a tailored newsletter for Neeta, with the information she wanted to share for her event, and taken the opportunity to get our new TEMPERS mnemonic made up into a new postcard – we’re taking lots of awareness raising material, chocolate hearts (why not!), love hearts…. leaflets, greetings cards, posters and much more besides. TOGETHER – we’ll make Kawasaki Disease memorable!
Your support, fundraising, support on social media, donations and all your own awareness raising is hugely appreciated. We really CAN turn this proverbial supertanker….. We really can make a difference for children affected by Kawasaki Disease! TOGETHER! And we will. Lots more exciting news to follow. Stay in touch!
Rachael, for Societi
------------------------------------------------------------- A R C H I V E -------------------------------------------------------------
Kawasaki Disease is the leading cause of acquired heart disease in children in the UK.
...it's time we changed that.
25 June 2017 Update
Well, it’s been an incredibly busy few weeks since I last wrote! I hope you’ll all by now know that we had an amazing opportunity presented to attend the RCPCH Annual conference. We took full advantage of that – only with support from parent funding - thank you Lucy & family for our largest private donation so far! Huge thanks also to KSSG for stepping in to make up the funding deficit just when we needed it too, so Societi didn’t go into a negative balance. With that terrific support we could really capitalise on a UNIQUE opportunity to speak to literally hundreds of paediatricians about Kawasaki Disease. What an incredible event.....
Societi & KSSG - Keeping you up-to-date
Welcome to the KSSG Members page! Thank you for checking it out! In discussion with Sue and Nicky we thought it would be useful for KSSG members to have a way of being kept updated with Societi progress - in between the periodic newsletters and other information we publish. So we have created this KSSG Members page on which Rachael will write an informal update specifically for KSSG members with information that might be of interest to families.
If you fill in a contact form and tick the box on the form for updates, you'll join our mailing list and we'll be able to email you whenever we update this page.
9th August 2016
Our Summer Newsletter is Published!
Dear KSSG Members,
I wrote last week, sending out the Newsletter to our Societi Supporters - that's those of you and others who have signed up through this website for our 'updates'. Whilst writing, I shared some great news I'd had earlier that week - further to my note below - and this is that Simon Gillespie, CEO of the British Heart Foundation will be personally joining our National Steering Group for Kawasaki Disease. We have a critical mass of key people assembled now and it's a great thing too - there's much to do! I think you'd all agree!
We've had a simply brilliant response so far to the Newsletter and loads more traffic on the website with lots of downloads going on, and lots of people spending time across the site. If you're a regular user of the site, please do fill in a contact form and we can get in touch when there are major updates to the site and share these with you first. Thank you to all of you who have done that already - and thank you too for so many positive messages over the last couple of weeks. I really appreciate your thoughts and comments.
You may have noticed (I hope so!) the 'New' section we've included on the home page - for quick reference for things we've published or added recently. Just now these include our summer Newsletter, but also our issues and needs 'infographic' - a one page headline summary on Kawasaki Disease and more detail on the Freedom of Information request we made in June to over 200 NHS Trusts. You'll have seen (or can read) more about that in the newsletter. And we've updated the Resources page with a host of things over the last couple of months, from Professor Tulloh's research abstracts on Kawasaki Disease incidence over the last three years, Professor Brogans research paper from last summer and a number of new Societi documents too.
Looking back, December 2015 seems a long time ago when I decided there must be more I could do to work with others and help bring about change for the better, by focussing on Kawasaki Disease. With the simply incredible contribution of so many people, particularly the fabulous Sue and Nicky from KSSG, our remarkable Societi Scientific Advisory Board Professors, and our simply extraordinary Chairman for Societi, I'm pleased with how far we've come -- and can see now too, how much more we need to do. Together, we will make a difference.
I hope you continue to find useful information on our website - please recommend it to friends and colleagues if you do. Sometimes when I come away from a discussion about Kawasaki Disease, perhaps with a prospective partner and I'm not certain whether the relationship will 'bear fruit', I satisfy myself with the knowledge that whatever else comes from that discussion - well, I've already achieved something by helping someone new understand about Kawasaki Disease. If nothing more is achieved, that's a massive achievement in itself, as we start to overcome the startling lack of knowledge about this sometimes pernicious disease.
So please, spread the word. It might seem like a small thing to do. But truly, it's the single most important thing we can do. Kawasaki Disease is the leading cause of acquired coronary artery disease in children in the UK....it's time we changed that -- and TOGETHER, we will.
Rachael, for Societi
The UK Kawasaki Disease Foundation
8 April 2017 - Pre-Easter Update
I thought I'd do a quick update as such a lot has been happening and it's all too easy to be busy-being-busy; and forget to let people know!
We've been making progress in a whole host of areas throughout the early part of the year, helped hugely by momentum from Kawasaki Disease Awareness Day at the end of Jan. Progress is great on the E-Learning (both for the parent support resource and the clinical training module) - and we've met in the last couple of weeks with our software developers, web developers and our film makers so progress feels good! We'll have more news in coming months - so watch this space.
Social media - which for us is largely Twitter - continues to be HUGE - we've now reached over 100,000 people and that's from a standing start... :)) we're very pleased. If you're on Twitter you'll find us - @Societi_UK_KD We're in the process of launching - bit by bit - Societi 100 - Societi Kids, working with a junior artist - an awareness raising approach we've developed with our media team - which means we can really focus hard on the child aspect without compromising individual children's privacy - and children's futures. There's a little more on this on the website which we've updated ('Why Societi' page).
We've been delighted with planning for the next UK Kawasaki Disease Steering Group - with EVEN MORE UK leads for health attending... and the BHF hosting us for that meeting - we're going to be discussing long term care, the new AHA guidelines which have just been published (I've put these on our website if you're yet to see them you can download them there) - and what this means for the UK guidelines; and our E-Learning! More besides... including still pursuing a national Registry for patients. We will keep trying. I'll keep you updated.
We're REALLY looking forward to the KSSG family day. We'll be there - with some fundraising ideas - as we're getting requests for these and have had some fabulous support from a number of you THANK YOU so much for all that is being done and being considered. It means such a lot. And by the family day - perhaps we'll have our next newsletter ready (oh, if only I can get it finished!!) Hope to see you there.
Rachael, for Societi
1 August 2016
An Update from Societi - From Rachael McCormack (Founder)
Dear KSSG Members,
Well, its been a hugely busy six or seven months since we got going and I'm really pleased to say that lots has been achieved. The most significant milestone which I wanted to share with you is that I'm delighted I'm able to confirm we will be holding the first meeting of a National Steering Group for Kawasaki Disease in September. This group, which Societi has brought together, has a remit of advancing integrated clinical management of Kawasaki Disease across the UK and raising awareness of the disease. It really brings a focus to Kawasaki Disease.
The group comprises myself and our Societi Scientific Advisory Board (Professors Robert Tulloh, Paul Brogan and Mike Levin) together with some hugely influential colleagues with a National remit - the NHS England National Clinical Director (Heart Disease) - Prof Huon Gray and the NHS England National Clinical Director (Children and Young People) Dr Jackie Cornish OBE.
We will be joined also by senior colleagues from the British Congenital Cardiovascular Association (which includes Paediatric Cardiologists), the British Heart Foundation and Public Health England. We are being hosted by the British Cardiovascular Society, thanks to the President, for our first meeting and we are working with the NHS Improvement Service as the group moves forward.
I'm very pleased, having identified the need for a national partnership as a priority within our Societi UK Strategy for Kawasaki Disease published in March this year, to now be taking forward this meeting of highly influential partners to make positive change.
We've got a great agenda for our first meeting, and we will build on our Societi research currently underway with findings from the recent Freedom of Information request Societi issued to every NHS England Trust, to understand the full picture of Kawasaki Disease nationally. In this we asked Trusts to tell us just what action they have taken following the Patient Safety Alert - and for information about the Kawasaki Disease cases they have dealt with over the last decade. This will create a unique insight into the UK 'picture' of Kawasaki Disease and help us as we plan our work. It has also given us the opportunity to get in contact with every single NHS Trust in England - and raise the profile of Kawasaki Disease!
This progress, and all we have done so far, has only been made possible through the support of many amazing people and a series of fabulous partnerships which Societi has actively established since we began - the most important of which is with you - KSSG, through our strong links with Sue and Nicky. Working together we can make powerful progress!
I'm putting our Societi Summer newsletter out at the end of this week which will have more updates on our work - on:
**** The National Steering Group for Kawasaki Disease
**** Work underway for a National Clinical Trial (acute treatments) which Societi is driving forward and we have now outlined, led by Societi SAB Professors
**** Updates on our partnerships and projects
**** Our Freedom of Information request - made to over 202 NHS Trusts!
.....and lots more that's going on -- and planned!
By the way.... If you'd like a copy of our Societi newsletter direct to your inbox - please fill in a "contact us" form (see the 'Contact Societi' link in blue (LHS) at the bottom of this page) - fill that in and tick the box to stay informed - and you'll join our mailing list. Those of you who've done that already will automatically get the summer newsletter of course!
Our website has gone international by the way.... Across twelve countries now! Over 1,700 unique page views, well over 600 unique users, 20% return visits too....
Don't hesitate to get in touch if you've any questions - anytime! And finally thank you to those of you who've offered and given so much support. I really value it hugely. As a voluntary organisation I mean it when I say that without it, we can't make such progress. Thank you again.
Kawasaki Disease is the leading cause of acquired coronary artery disease in children in the UK.... it's time we changed that -- TOGETHER we will!
Rachael, for Societi